Monday, September 5, 2011

Say It Loud, I'm a Gimp and I'm Proud!

Apologies to James Brown for the title of this post, as his 1968 funk classic "Say It Loud, I'm Black and I'm Proud" (click here to listen) helped galvanize the civil rights movement in America, offering a joyous rallying cry to people who for far too long had suffered at the hands of racism and oppression. The song was not only a shout of protest, but an admonition to embrace the very thing that conferred minority status on an entire people and turn what for some had at one time been a mark of shame into a badge of honor. On top of all that, the song irresistibly generates the urge to get up and shake your groove thing. That is, of course, if you are able to get up at all.

Those of us whose disease has progressed to the point where shaking our groove things is a distant memory and has left us visibly disabled - reliant on canes, walkers, or wheelchairs - also find ourselves members of a minority group, the disabled, the inclusion in which leaves some feeling invisible, helpless, and diminished. Much of the world simply isn't designed for people who don't have full use of their limbs, and the fully functional folks who populate it can be insensitive, uncaring, ignorant, and sometimes even intolerant. Though much progress has been made in in the fight for the rights of the disabled, the struggle is closer its beginning than its end.

Throughout much of history, victims of chronic illness, particularly of the kind that deform or disable, have often been looked upon with scorn, as if getting sick was somehow a mark of shame, the afflicted somehow responsible for their own affliction. In some cultures it was considered bad luck to merely let your gaze fall upon such a person, and even in those societies with a somewhat more sophisticated purview, it was often thought best to sequester these people away, if only to keep the more fortunate from feeling uncomfortable and ill at ease. Even within the last hundred years, the Nazis saw fit to exterminate those with chronic or genetic illnesses, to keep their precious Aryan gene pool from being polluted by such wretchedness.

It's no wonder, then, that the sick can sometimes feel some vague sense of shame, wondering what on earth they'd done to deserve such a fate. The human mind seems programmed to search for reasons, yearning for clearly defined cause and effect connections in a futile attempt to make some sense of the world and our place in it. The sheer randomness of getting hit with a miserable disease is in itself unsettling; in some ways illness might be easier to deal with if we could discern some reason for our demise, if we could appease ourselves with the knowledge that our current sorry state was brought about by some heinous act we'd committed in the past. No dice, though, the truth is that in the giant poker game of life we were simply dealt a crappy hand. Remember, though, that played the right way, with just the right amount of bluffing, sometimes even a handful of rags can be turned into a winner.

As I whiz around the city in my wheelchair, I often encounter fellow members of the electric chariot club, and always attempt to give them a friendly nod and a hearty hello. Many eagerly return the favor, but others seem to fold into themselves, clearly wishing they could become invisible, embarrassed that any attention be shined on them. My heart goes out to these folks, particularly because I completely understand where they're coming from, and then some. I was once quite the prideful jackass, mortified at the thought that the wonderful me could wind up in a wheelchair, and when the day finally came and the damn thing was delivered, I stared at it for several hours feeling quite nauseated before working up the gumption to actually get in and give it a try.

I've never felt more acutely self-conscious than those first few minutes wheelchairing out on the streets of the city, thankfully with my wife by my side. Soon enough, though, I realized that most of the people on the street were so self-absorbed that they didn't even notice me, as was evidenced by their propensity to walk right into me and my mechanical monster, as if anything below chest level was invisible. Before long I chafed at the idea that some freaking wheelchair was going to define me. Screw it, I would define it. I am not a chair, a cane, a walker, or an ankle brace, I'm Marc, and maybe now an even better version than the old Marc, having survived and learned from the endless gauntlet of physical and emotional affronts so thoughtfully provided by my disease and the modern medicine machine into whose belly I've forcibly been thrust.

Chronic disabling illness provides quite the double whammy; not only must the patient deal with the sobering psychological realities of being sick, but also with the physical handicaps wrought by their affliction. I'd imagine that even for the most stalwart among us, the burden can sometimes be just about too much to bear. Despite always attempting to publicly put my best foot forward (ha ha), each landmark on the road to disability has caused me emotional turmoil and plain old heartache. I've stumbled down a path familiar to far too many, marked by a succession of assistive devices, each one more obvious and discomfiting than the last. The anticipation that preceded my needing each of these devices was undeniably gut wrenching, so much so that in retrospect I realize that I put off reluctantly accepting their help for far too long. Frantically holding on by my fingernails to a self-image that had simply ceased to be, when I finally relented and allowed these mechanical aids into my life, they brought with them much needed relief and liberation, rather than the shame and revulsion that I had been so fearfully expecting.

Overcoming the mental and physical hurdles represented by accepting my increasing vulnerability has certainly given me a new sense of perspective, and maybe even a pinch of wisdom. The strange truth is that although my disease has left me exceptionally weaker physically, it's also made me immensely stronger psychologically. Like each and every one of my fellow patients, I've overcome obstacles before which I thought I would simply shatter, and by so far surviving the raging battlefield of illness I've gained self-knowledge and an inner fortitude that I never previously could have imagined myself capable. I've witnessed bravery and guts in other patients that have oftentimes had me verging on tears, daily displays of strength often nonchalantly expressed with nothing more than a smile and a shrug. I tip my hat to all of you, and invite everyone to join me in raising a big middle finger to any thoughts of shame or self-doubt brought about by the random bad luck of being socked by a serious illness, to any notion that we as people have somehow been diminished by our disease, and to the goddamned disease itself. Having and living with MS sucks, but the challenges it presents give ample opportunity to display grace, courage, and powerful determination.

22 comments:

I've been enjoying reading your blog for the past year or so. I have Transverse Myelitis. Some folks who have TM(Transverse Myelitis) go on to have MS. I've had TM for 18 years and have mostly been fairly fortunate. Lately though, I've been getting my ass kicked by TM, side effects of TM, and other new things that I can't seem to explain. I struggle daily with fatigue, anxiety, lower back pain in my hip area that almost prevents me from walking at times, and depression. I have a wife, son(21), and a daughter(5). I also have a full time job and the last 6 months have been a daily struggle juggling all of this. I ask myself , how do I know when it's time to stop working? I would love for you to write up your thoughts about that very question sometime. Maybe you already have something that you wrote up in the past? I'll look around :) Anyhoo, I could really relate to the part about holding onto an image of myself that doesn't exist anymore. Thanks for speaking your mind and your truth.

A pinch of wisdom? How about an ounce? Add compassion to the mix and you’re starting to get into the pound category. All the same, I don’t know about you, but all that personal growth notwithstanding, I’d still like to be dancing to the sound of James Brown over the loudspeakers. And that is just being honest.Judy

As usual Marc you're spot on with your comments and observations. The humiliation I feel by the effects of this sodden disease has for the most part led me to the choice of isolation over humiliation. Why do we feel the shame we do? Because where we once used to take pride in how we looked, now we cringe at what we've become. I KNOW I did not bring this condition on myself. Yet I still feel responsible for the effects its had. Simply put, I feel the physical deformities are a reflection on me, who I am as a person. Nope, ain't logical but there you have it..I hate this &*&%^ MS so much that if I ever check out, it will be as much to kill IT as it will be to end the struggle.

In our culture, people are often defined in other peoples' eyes by what they do. Over time, we come to define ourselves by our interactions with others. If you think this is a new thing, ask yourself why so many people have last names like "Smith." Others have last names because of where they lived, like "Hill." At a very young age, we're taught who we are, even when we lucky few are left with choices as to what we will do with our lives. The what we do becomes how we are known. Every parent is probably familiar with the exchange along the lines of, "Of you're so and so's dad/mom."

Perhaps the hardest part of the march to disability is the redefinition of self. Suddenly, the sum of our roles before illness or accident seems so great compared with the sum of what we can do now. Are we less somehow for our disability?

Sometimes MS strips us of our roles in life as the doer and the maker. Maybe what's left is merely us, unadorned, and unmasked. Sometimes what is left is the best of us which lay hidden behind the roles of things we do. Sometimes it's the worst, the grumpiest and the meanest. What's left is us. Take it or leave it.

That's my inner version of "I'm loud and proud." I've never run from or hidden my MS, and I hope I never will.

Having been assaulted by the effects of chronic fatigue fibromyalgia and a compromised immune system for over 13 years, I totally get the middle finger up and over it, man! Proud and loud! Shame is about what others cast upon you and it is cruel.

I like how you re-think the "silver lining thing" and make it about how struck you by having encountered your own strengths.

Thanks, Mark. And by the way, never underestimate how helpful it is to fight shame when you have a partner and loved ones around who encourage your own strength while being by your side.

Its great to know someone else feels the same. I still remember when they delivered my elec chariot and I cried. The 1st time I went out my door, totally self-conscious. I'm 59 yo so I feel invisible due to age AND disability. People speak slowly and loudly to me, as if the ms has impaired my mind, not just my legs. Thanks for all your blogs, videos, giving me a shot of courage and determination.

I'M A GIMP AND I'M PROUD!! Marc, I've actually felt more grief than shame about having MS, but have welcomed all my mechanical aids as they were needed, not just for the safety they've provided me, but for the liberation they've given me. Of course, I'd rather approach the world with the same ease as others do, and as I myself once did. But I knew early on I had to either make peace with this hand I've been dealt, or be miserable. Let's roll...

I love riding my electric chair in the streets of Paris. Lots of people envy me, specially children, impressed by the encounter of another kind of adult seated in a joysticked stroller. I never look at them, tired of their hallucinated questioning face. I also smile raising my eyes to the sky when people hesitate which side to choose to avoid my path, grumbling a confused "sorry, sorry" !Oh you poor walkers...

David-since you've been reading my blog for the last year, you're probably aware that my MS diagnosis is very much up in the air, and I've been told that the lesion on my spine resembles what you would see in TM. The question is, what caused the TM like lesion? Anyway, I completely understand your feelings, and can commiserate with your struggle. Feeling the effects of progression is disquieting (much too weak a word, actually), and certainly could be contributing to your anxiety and depression. As for knowing when it's time to stop working, my decision was made easier by the fact that I'd caught wind of the fact that my division might be shutting down in several months, thereby putting me out of work. I couldn't risk losing disability insurance, and in actuality my disease had progressed to the point that "retiring" wasn't much of a stretch. Ultimately, I wound up going out on disability maybe three or four months before I would have been forced to by the disease. My best advice would be to seriously consider whether or not the rigors of working every day are having a seriously negative impact on your health. When I stopped working, all I wanted to do for the first couple of weeks was sleep. I didn't realize how absolutely exhausted I was from the daily struggle to simply keep on working despite my disabilities. Best of luck to you, the decision isn't easy, but please do keep in mind that there is life after "retirement".

Webster-good attitude, my fellow proud gimp…

Judy-I'd gladly give up all of the self-knowledge and "wisdom" I've attained for just one night of dancing with you to the sound of James Brown blasting from some speakers. Not to discount the value of whatever enlightenment has been forced upon me, but there is something to be said for the old adage that ignorance is bliss…

Anonymous-I certainly understand your sentiments. Sometimes it is simply unbelievable to consider the reality of the situation we find ourselves in. That old self-image dies hard, in my dreams I'm almost never in a wheelchair. It's hard not to blame yourself when there is nobody else to blame, there's something about our makeup that just wants to have a villain to assail. But do recognize that you bear no blame in your own illness, and try to practice self kindness. Try not to let your isolation become a snake eating its own tail, force yourself to get out in the world a bit, and I think you'll find far less humiliation than you anticipate. It's important not to lose your connection to humanity, although I completely understand the impulse to simply withdraw. You're still the same person you were before the disease struck, though, please keep mind of that and try not to let the disease redefine you. Bottom line, the situation sucks, but you gotta try hard not to get stuck in the suck.

Life-beautifully worded, and profoundly put. The disease does strip us to our basics, down to the frame. Who are we would all be adornments of life are taken from us?. Sounds like you've thought long and hard about these things, and have a very good handle on them. Thanks for your terrific comment.

Anonymous-thanks for the kind words, and joining me in lifting that big middle finger. I definitely second your sentiments about the value of partners and loved ones, they can be a tremendous resource of strength. Best to you and yours, as well…

Sue-another member of the middle finger club. Welcome, your membership kit should be arriving in the mail any time now…

Anonymous-it is incredible that some people seem to think that being in a wheelchair somehow renders you deaf and dumb. Don't be shy about quickly correcting their mistake. I'm gratified that my blog has given you some solace, and there is comfort in knowing that others share your feelings and misgivings. Thanks for your kind words.

Centennial-as one of my first readers, I'm always so happy to see your comments. From day one you've always displayed some real solid grounding and sense of self, and your attitude towards mechanical assistance is firmly rooted in reality. Yes, there is grief, but that's only natural, unavoidable, and sometimes even healthy. Glad you made the choice not to be miserable, and I'm rolling right there beside you, in spirit if not in body…

TraceyTodd-"what other people think of you is none of your business". I love that. Thanks for the contribution.

Toni-James Brown, The Godfather of Soul, The Hardest Working Man in Show Business, His Bad Self. May he rest in peace, but I bet he's got them dancing in the aisles on the other side…

Anonymous-one of the problems with progressive disease is that it's so hard to accept the continuing progression. If we were simply struck with disability we could mourn our losses and then try to move on, but the constant accumulation of loss makes it difficult to come to grips with old losses as new ones keep mounting. I too look back on the healthy me and realize there were times I may have been quite insensitive to those who were in the position I now find myself. Can't go back, though, can only learn and really appreciate those healthy folks who do "get it"…

GRANDJOEBELL-man, I'd love to join you rolling through the streets of Paris. What a great city. Some things really are universal, I find that here in NYC children, especially small boys, our most fascinated with my chair. I'm also amused by the occasional befuddlement of pedestrians, and secretly thrill at the fact that I am now able to travel much faster than they can. We've got to take our pleasures where we can find them…

I forgot to add that I understand your feeling about fellow wheelchair users. As a social worker in my company once quoted it : there is the same variety of unfriendly disabled people as abled ones. Which means plenty are egotist or indifferent. Plus the fact that most of them suffer from these inhibition complexes...I actually managed to engage conversation in the street only thhree times in five years. Two were homeless chaps, and the last one a cerebral palsy, gifted with a charming and unique innocent glance ...

For the last year I am in love with your site as it reflects our life a 1000% - thanks. I have started to pass your articles to non MSers (colleagues, friends). Their reaction is great and it helps them to understand us much better.

I believe that your posts should be published in newspapers and magazines.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...